Is this a PANDAS pattern?

[Debbie1]

Hi all. I hope that one day I am able to offer guidance to others here rather than constantly asking questions. Unfortunately, I am not there yet and I need your help.

 

As posted previously, my 7 year old son was put on 10 days of amoxicillin following a negative throat culture but extremely elevated titers, tics and OCD. For the first several days on the amox, he seemed worse. After that, stable. By the end of the 10 days, he was noticably improved. We have now had about five consecutive good days.

 

Yesterday I picked up a copy of my son's file from his pediatrician. The 2006-2007 school year was terrible for my son. He developed tics, OCD and frequent bathroom use. When I say frequent, I mean every 5 minutes. At times, he would walk out of the bathroom and turn around and walk right back in. Urine cultures were negative and he was treated with ditropan. He was eventually sent to a urologist who put him on detrol. His OCD and tics got bad enough that the neurologist put him first on Klonopin and then on Zoloft. After starting Zoloft, the bladder issues subsided and we stopped the Detrol. It seems in hindsight that he kept being treated for individual symptoms, but no one ever saw the whole picture.

 

He had strep six times that year. I found the same pattern in his records three times:

 

1) Sore throat, culture was negative

2) Frequent urination begins including waking at night

3) Positive throat culture, treated with antibiotics

4) Some improvement in bladder

 

(I still have to go back and think about how his tics were during these cycles)

 

What is confusing to me is the timing of the symptoms. One time this pattern took 1 month from the time of the negative culture to the positive culture. The next time it was two weeks. The third time he had the negative throat culture, then the frequent urination. 1 month after the culture he was put on antibiotics for an ear infection. Three weeks after that, he was positive for strep. Bladder improvement was noted in the file after the strep was positive and treated.

 

So is this a PANDAS pattern???

 

At the time, no one made a connection. Everytime we noticed bladder improvement, we attributed it to the ditropan, detrol or Zoloft. We (and the doctors) never made the strep connection. Could it have been the antibiotics that were causing the improvement?

 

I have an appointment with a specialist at the end of October. I am trying to get this all sorted out in my mind before then.

 

Sorry to ramble. Four weeks ago my son's vocal tics were so bad that he said to me "Can't you find a doctor that can make this go away?" I cried.

 

Today he said "Guess what? I don't feel like I need to make those sounds anymore!" I cried again.

 

This is one emotional rollercoaster. On to the 2007-2008 records.

[bmom]

Yes, there was one day my son had frequent urination and a sore throat. I took him into urgent care. They tested him for bladder infection and strep. Strep was positive and he was placed on antibiotics. The frequent urination stopped while on antibiotics and I thought it must have cleared the bladder infection, but the hospital called a few days later and the bladder came back negative-no infection. So I guess it was the strep causing this reaction and once the strep was gone, the urination stopped.

[Buster]

Hi Debbie1,

 

Your write up was interesting. Do you know if your pediatrician did rapid strep tests (i.e., called you back within the day) or whether the tests were 2-3 days before results?

 

You indicated that your son had strep 6 times. What antibiotic was he placed on for the strep? How long until the symptoms subsided? How long till he didn't worry about urination? How old was he at this time?

 

Was there any dental work between the time his throat was first cultured and when the culture came back positive?

 

Regards,

 

Buster

[Debbie1]

Buster,

 

The pediatrician did a rapid test and then cultured it overnight only. We got a call the next morning when it was positive.

 

My son was five at the time. Antibiotics used were 1) amoxicillin 2) Cefzil 3) Augmentin 4) Duricef 5) Augmentin (for ear infection) then Duricef for strep three weeks later 6) Cefzil.

 

During the first episode, some improvement in bladder was noted one week after starting antibiotics. 2nd cycle - next day. Although symptoms improved, they were not better. 3rd cycle was the Augmentin then the Duricef (May 2007). Two weeks later, the records show that there was bladder improvement. At that point, We had a MUCH BETTER period for several months through the summer and into the next school year.

 

In late December 2007, records show sore throat and negative throat culture again. By early January, I had called to report significant increase in OCD and tics. This began another very difficult time. I went back to the neuro who adjusted medication and was considering some behavioral therapy. He was having side effects from the meds and I started looking for alternatives. That is when I found this website. We drastically altered his diet and within three weeks saw dramatic improvement. Just noticed last night though, that he was diagnosed with a sinus infection at the end of January 2008. Was put on amoxicillan. So now we are wondering whether it was really the diet changes or the amoxicillin that made him better (or maybe both).

 

February through July 2008 was great for him. He seemed so much better. Then in August, dramatic sudden onset. Tics, OCD and frequent urination were back. Looking back, he had two negative throat cultures in July. Two to three days before onset, his sister was positive for strep.

Symptoms continued all month through the beginning of this school year. Medication was adjusted with some but not total improvement. Then we suggested PANDAS to the doctor and had the titers done. Very high. Amox was started and 10 days later, he was much better. He is not running to the bathroom, his tics are gone and he falls asleep more easily at night.

 

I have to go back and check the dental records. He probably had one check up and cleaning during the strep episodes. What is the connection?

[Buster]

I have to go back and check the dental records. He probably had one check up and cleaning during the strep episodes. What is the connection?

 

I asked because we noted significant exacerbations following dental cleaning/tooth extractions in our dd. Similarly ARF and SC patients are put on propholaxis antibiotics when having cleaning because any carriage in the throat can easily be introduced into the blood stream causing rapid growth from the release bacteria.

 

Your write up certainly seems to show a strong correlation to improvement on antibiotics. I don't know any advice to give you here except keep up the vigilance and throat cultures.

 

Please note that even on antibiotics, recolonization can occur from a family member. We discovered in our household that dd's sister was an asymptomatic strep carrier and it appears that dd was getting recolonized until we eradicated strep in her sister.

 

This is most assuredly not a controlled study, but given you son's sensitivity, you might want to consider .

 

Regards,

 

Keith

[EAMom]

Hi Debbie,

 

Was the december 2007 (neg) throat culture 72 hour? Unfortunately, throat cultures are not always 100% accurate.

 

Did he have a throat culture Aug. 2008 (when his OCD, tic, urination, issue came back)? (It would probably be enough evidence for me that sister was postive.)

 

I would agree with Buster's recommendation about checking other family members for strep (assymptomatic carriers).

 

I would also change toothbrush/toothpaste a few days into each set of antibiotics and not have your son share toothpaste with others. Strep can live on toothbrushes for a couple of weeks and can reinfect. I would imagine toothpaste tubes could tranfer strep as well.

 

So is this a PANDAS pattern??? (My vote, for whatever it is worth, is "yes.")

[P_Mom]

Debbie,

My vote, also for whatever it is worth, is also definitely "yes."

[Dedee]

Debbie,

 

I can only give you my experience and you can decide for yourself. My son's PANDAS went undiagnosed for years even after abrupt onset OCD immediately following a strept infection and flare ups following subsequent strept infections. In addition, he also had issues with the need for frequent urination. And like many here we found no corresponding physiologic reason. We did the whole pediatric urologist thing, multible tests, nothing...notta. Eventually it faded away and no more was thought of it. However after he developed his tic disorder (during a strep infection), he finally got the PANDAS diagnosis. After many failed attempts to find proper treatment in our area we eventually traveled 8 hours to Shands clinic to see Dr. Murphy. Let me tell you, she knew my son inside and out. She was able to tell me things about him as though she had known him since birth. One thing she asked about was if he ever had any issues with his bladder or with urination. I almost hit the floor, because I had dismissed that and never brought it up again to any other health care giver. Of course when I started telling her about it she was nodding and said that most PANDAS kids will, at some time, have these issues. She said it is unclear wheather or not it is a problem with the strep antibodies affecting the part of the brain that interprets signals from the bladder or if there is some strep component within the bladder itself. All they know for sure is that it is a commonality with most all PANDAS patients. It usually resolves eventually and the best thing is to not make issue of it. Actually my second son, has intermittent issues with this also, which of course causes worry. I have found that the less I say about it the better he does. It is a very strange thing, almost like they are having bladder spasms (if you have ever done that). Anyway it seems very real to them and that is all that matters. I guess as parents, we need to be as understanding and patient as possible.

 

As far as the rest of your story, just my opinion, but it sounds very PANDAS to me. What I have found helpful (someone on this board mentioned it), is to do a spread sheet of your childs behavior, and tics on a daily basis, documenting what meds he is on and what other contributing factors are present at the time. When you look back over time it will show you a definate pattern. We did this and took it with us to see Dr. Murphy. They all thought it was great and kept a copy for his file.

 

I am sure you will eventually get the treatment plan that works for you. It sounds as though you are on the right track. Good luck!

 

Dedee

[trubiano]

All your child's issues are inline with what my son went through. Stay on antibiotics daily and I bet you'll see things get better. My son's ticcs are about gone there are so few. The vocal one was the first to go.

[Debbie1]

Thank you everyone for your replies. Just to answer a few questions that came up -

 

1) The December 2007 throat culture was a rapid and the cultured overnight only.

 

2) He had two cultures in July 2008, both were negative. He was not cultured in August 2008 when he had abrupt onset on tics, OCD and bladder symptoms after his sister tested positive for strep. Probably sounds ignorant of me, but I first heard of PANDAS a few months ago when reading a book (possibly Sheila R.'s). No doctor ever mentioned it to us nor did they ask us whether he had a recent strep infection when we discussed his symptoms. So when we first heard of it, we never considered it a possibility.

 

Thanks to the people here, I suggested the possibility to my doctor in the beginning of September 2008. He agreed it was worth looking into, given my daughter's recent strep and the immediate onset of my son's symptoms. I requested a 72 hour culture at that point (he usually does overnight only) and the culture was negative. We went for blood work and that was when we got the high titer results, suggesting this is a possible PANDAS case.

 

Dedee - the spreadsheet suggestion is a great one. We have been working on putting it together. What we find the most time consuming is piecing together all of the historical information, but we believe it is well worth the effort. On a separate note, I have found your posts extremely encouraging. I too have been through a few years of possible incorrect diagnosis. It is so encouraging to me that you pursued, found the right doctor and above all, that you son is doing well now. It really gives us hope. Thank you.

[lss]

The tics and other symptoms can also be triggered by sinus infections.

 

Buster,

 

The pediatrician did a rapid test and then cultured it overnight only. We got a call the next morning when it was positive.

 

My son was five at the time. Antibiotics used were 1) amoxicillin 2) Cefzil 3) Augmentin 4) Duricef 5) Augmentin (for ear infection) then Duricef for strep three weeks later 6) Cefzil.

 

During the first episode, some improvement in bladder was noted one week after starting antibiotics. 2nd cycle - next day. Although symptoms improved, they were not better. 3rd cycle was the Augmentin then the Duricef (May 2007). Two weeks later, the records show that there was bladder improvement. At that point, We had a MUCH BETTER period for several months through the summer and into the next school year.

 

In late December 2007, records show sore throat and negative throat culture again. By early January, I had called to report significant increase in OCD and tics. This began another very difficult time. I went back to the neuro who adjusted medication and was considering some behavioral therapy. He was having side effects from the meds and I started looking for alternatives. That is when I found this website. We drastically altered his diet and within three weeks saw dramatic improvement. Just noticed last night though, that he was diagnosed with a sinus infection at the end of January 2008. Was put on amoxicillan. So now we are wondering whether it was really the diet changes or the amoxicillin that made him better (or maybe both).

 

February through July 2008 was great for him. He seemed so much better. Then in August, dramatic sudden onset. Tics, OCD and frequent urination were back. Looking back, he had two negative throat cultures in July. Two to three days before onset, his sister was positive for strep.

Symptoms continued all month through the beginning of this school year. Medication was adjusted with some but not total improvement. Then we suggested PANDAS to the doctor and had the titers done. Very high. Amox was started and 10 days later, he was much better. He is not running to the bathroom, his tics are gone and he falls asleep more easily at night.

 

I have to go back and check the dental records. He probably had one check up and cleaning during the strep episodes. What is the connection?

[lss]

Dedee,

 

I am thinking of going down to St. Pete to see Dr. Murphy (she is no longer at Shands). I have also heard on this forum about Dr. K. in Chicago, and am torn as to what is best for my son. I understand the Dr. Murphy was in on the initial studies of Pandas and therefore would be very knowledgeable. How long did you have to stay in Florida to see her and also what meds and for how long will your child have to be on them. My concern is putting a band aide on this and not fully getting rid of the symptoms. Do the kids outgrow this after puberty? Many unanswered questions with this autoimmune disease. Any insight you can give, would be much appreciated.

Linda

 

Debbie,

 

I can only give you my experience and you can decide for yourself. My son's PANDAS went undiagnosed for years even after abrupt onset OCD immediately following a strept infection and flare ups following subsequent strept infections. In addition, he also had issues with the need for frequent urination. And like many here we found no corresponding physiologic reason. We did the whole pediatric urologist thing, multible tests, nothing...notta. Eventually it faded away and no more was thought of it. However after he developed his tic disorder (during a strep infection), he finally got the PANDAS diagnosis. After many failed attempts to find proper treatment in our area we eventually traveled 8 hours to Shands clinic to see Dr. Murphy. Let me tell you, she knew my son inside and out. She was able to tell me things about him as though she had known him since birth. One thing she asked about was if he ever had any issues with his bladder or with urination. I almost hit the floor, because I had dismissed that and never brought it up again to any other health care giver. Of course when I started telling her about it she was nodding and said that most PANDAS kids will, at some time, have these issues. She said it is unclear wheather or not it is a problem with the strep antibodies affecting the part of the brain that interprets signals from the bladder or if there is some strep component within the bladder itself. All they know for sure is that it is a commonality with most all PANDAS patients. It usually resolves eventually and the best thing is to not make issue of it. Actually my second son, has intermittent issues with this also, which of course causes worry. I have found that the less I say about it the better he does. It is a very strange thing, almost like they are having bladder spasms (if you have ever done that). Anyway it seems very real to them and that is all that matters. I guess as parents, we need to be as understanding and patient as possible.

 

As far as the rest of your story, just my opinion, but it sounds very PANDAS to me. What I have found helpful (someone on this board mentioned it), is to do a spread sheet of your childs behavior, and tics on a daily basis, documenting what meds he is on and what other contributing factors are present at the time. When you look back over time it will show you a definate pattern. We did this and took it with us to see Dr. Murphy. They all thought it was great and kept a copy for his file.

 

I am sure you will eventually get the treatment plan that works for you. It sounds as though you are on the right track. Good luck!

 

Dedee

[michele]

We went to see Dr. Murphy in Florida. She was very knowledgeable on PANDAS and was able to diagnose my son with PANDAS. It felt great to have this verified. However, she did not write any prescriptions for meds because we live out of state. She did make up a treatment plan that included OT. She was very forsightful because he is having issues with motor skills showing up now. We have done OT for a year now. I have to tell you her treatment plan did help with some Dr's to write a script for antibiotic long term treatment like the immunologist. Others will still be skeptial of PANDAS even with the diagnosis from her. I have had trouble getting his neurologist to go along with the PANDAS diagnosis. He believes it is TS. I don't think she uses IVIG but rather suggests Tenex or Abilify for tics. Possibly ADD meds like low dose of Ritalin or anti axiety medication and getting help from a psychologist/psychiatrist for the behaviors. She does not recommend tonsils being removed either. So if you are looking for a fix rather then medicines to mask the symptoms she might not be your answer. I could go over more with you if you want to PM. Dr. K seems to be the one who is doing the IVIG. I am waiting for his reseah to be published.

 

Michele

Dedee,

 

I am thinking of going down to St. Pete to see Dr. Murphy (she is no longer at Shands). I have also heard on this forum about Dr. K. in Chicago, and am torn as to what is best for my son. I understand the Dr. Murphy was in on the initial studies of Pandas and therefore would be very knowledgeable. How long did you have to stay in Florida to see her and also what meds and for how long will your child have to be on them. My concern is putting a band aide on this and not fully getting rid of the symptoms. Do the kids outgrow this after puberty? Many unanswered questions with this autoimmune disease. Any insight you can give, would be much appreciated.

Linda

 

Debbie,

 

I can only give you my experience and you can decide for yourself. My son's PANDAS went undiagnosed for years even after abrupt onset OCD immediately following a strept infection and flare ups following subsequent strept infections. In addition, he also had issues with the need for frequent urination. And like many here we found no corresponding physiologic reason. We did the whole pediatric urologist thing, multible tests, nothing...notta. Eventually it faded away and no more was thought of it. However after he developed his tic disorder (during a strep infection), he finally got the PANDAS diagnosis. After many failed attempts to find proper treatment in our area we eventually traveled 8 hours to Shands clinic to see Dr. Murphy. Let me tell you, she knew my son inside and out. She was able to tell me things about him as though she had known him since birth. One thing she asked about was if he ever had any issues with his bladder or with urination. I almost hit the floor, because I had dismissed that and never brought it up again to any other health care giver. Of course when I started telling her about it she was nodding and said that most PANDAS kids will, at some time, have these issues. She said it is unclear wheather or not it is a problem with the strep antibodies affecting the part of the brain that interprets signals from the bladder or if there is some strep component within the bladder itself. All they know for sure is that it is a commonality with most all PANDAS patients. It usually resolves eventually and the best thing is to not make issue of it. Actually my second son, has intermittent issues with this also, which of course causes worry. I have found that the less I say about it the better he does. It is a very strange thing, almost like they are having bladder spasms (if you have ever done that). Anyway it seems very real to them and that is all that matters. I guess as parents, we need to be as understanding and patient as possible.

 

As far as the rest of your story, just my opinion, but it sounds very PANDAS to me. What I have found helpful (someone on this board mentioned it), is to do a spread sheet of your childs behavior, and tics on a daily basis, documenting what meds he is on and what other contributing factors are present at the time. When you look back over time it will show you a definate pattern. We did this and took it with us to see Dr. Murphy. They all thought it was great and kept a copy for his file.

 

I am sure you will eventually get the treatment plan that works for you. It sounds as though you are on the right track. Good luck!

 

Dedee

[_Jennifer_]

We were just diagnosed a week ago with panadas, so still new to all of this. My son is 13, when he was 9 he started having what we called a urination tic, after the doctors told me he was fine. I just thought well it had to be OCD or a tic, he would go to the bathroom sometimes every 5 minutes, on the way to Disney 18 hour drive it was so bad I had him pee into an empty juicy juice bottle, I have never told anyone that. At school he had to go so much a teacher sent a student to listen and report back to her how much urine he heard go into the toilet, My son will still recall and feel the urge to relive that story for some reason. He always tells it the same way if he hears me talk about his urine tic to a doctor. Going to the grocery store or any store, he would go 2 or 3 times, eventually he new exactly where every stores bathroom was located. it did seem to just go away one day about 2 years ago never returning. He was given the diagnosis of post streptococcal glomerulonephritis as well as panada and Sydenham's Chorea, about a week ago. We have all the appointments lined up just waiting on the days to go by. I am not sure what to make of it. During the urination tic his UA were normal and the one repeated after that was ok, but now he has 2+ protein, 2+ Occult blood, specific gravity is high, BUN/Creatinine Ratio is high, RBC are high, and mucus threads are present. I have picked up some of his records and waiting on the others to be ready to pick up. My son has been seeing a school counselor who visits with all the children in our district with tourette syndrome, He started seeing her when he was 7, any who, we were talking the other day and she said that one of her mothers brought up her TS pandas Childs birth and recalled having group b strep, we are tested when we are in our 35th week of pregnancy, well she tested Positive as due alot of people and had the antibiotics during delivery, well her son was born and tested positive for strep A. I haven't read anything about this on the internet but thought it was interesting, I don't recall being tested with my TS son, I definitely did not receive antibiotics with his birth but was positive with my second delivery and given the antibiotics with him. just thought it was interesting I wonder how many TS mothers tested positive for this strep. I thought TS consumed my life but this PANDAS is no joke I feel like there will never be an end to his suffering. well sorry for rambling and good luck with everything Jennifer

[Dedee]

Linda,

 

I think Michelle may have answered some of your questions. In my case, we made our appointment a couple of months ahead of time and drove down the day before the visit. We saw her the next day and the visit took several hours. After the visit we drove straight home. It really went very smoothly. We had left our other children with their grandparents so the trip wasn't so stressful. As far as treatment, he takes antibiotics daily along with fish oil, multi vitamin and magnesium. This seems to work for him very well. Her suggestion was that we attempt to take the antibiotics off after about two years and see how he does. If he doesn't do well then back on for another year then try again and so on. We are planning on attempting to take him off next summer. Definately not during school. He turns 13 this month so will be having lots of hormone surges, and other changes that tend to exaserbate (sp?) PANDAS. However, he already is going through much of that and hasn't had any trouble. He is now 5'9" and weighs 165 so he is really growing. I am nervous about trying to wean antibiotics but I know it is necessary.

 

I am sure it feels like this is never going to end for you. But just hang in there and keep searching for the right treatment plan for your situation. You can do it. Your a great mother, if you weren't you wouldn't be here looking for answers. Keep us updated and good luck!

 

Dedee